TV Debut

Today Miss Avery had her TV Debut. Every year the Children's Miracle Network has a telethon to raise money for USA Children's and Women's Hospital. During the telethon they have the local news people at the NICU interviewing nurses, doctors, and parents. They walk around and show the various babies and the equipment that is used to take care of these babies. This is how Miss Avery ended up on TV. While we were visiting today they came and talked to us and of course we got to show off little Miss Avery. Miss Avery's grandma caught her inverview and said Avery was just looking around the whole time. Of course that wasn't the case when I tried to get some pictures...

It was pretty interesting to hear just how much the equipment costs. The monitors which display Miss Avery's good grades, as we call it, costs about $30,000. That is just one of the pieces of equipment used on babies there. As they were going through the costs of equipment I think I roughly calculated Avery had on average $100,000 worth of equipment on her. This includes the isolett, cpap machine, heart monitor machine, etc. Right now she would be using less since she doesn't have the cpap machine any more.

Another one of the statistics we heard today was that 30 years ago 90% of babies under 2 lbs did not survive. Today 96% of babies under 2 lbs do survive. It is astounding to think about how far the knowledge and technology necessary to help a baby like Avery has come and it is comforting to know there are organizations like Children's Miracle Network to help keep this good work going. Children's Miracle Network donates 100% of donations to local hospitals. Around here that hospital is USA Children's and Women's. And I have to say I feel very fortunate to have access to a hospital like USA and even more fortunate that it is so close.

3 Pounds!

Miss Avery hit 3 lbs yesterday! Her official weight was 3 lbs 0.3ozs. She likes to squeak by on those milestone weights. She did the same thing when she hit 2 lbs. Yesterday her nurse dressed her up to celebrate being 3 lbs. She put her in party clothes. It was pretty funny because the outfit swallowed her. She looked pretty cute though.

It is just amazing how fast she is growing. She is starting to get little chunky cheeks which are super cute, has a bigger passy, and is now wearing bigger diapers (as of yesterday). She is on the 3rd size of diapers! I think these are the official preemie sized diapers. The other diapers she wore were so small you couldn't even buy them at the store.

She is getting close to being able to try a bottle and she is so close to being tried off her cannula.
At the rate she is going now it won't be long before we will be bring her home. There are still several things she needs to do, but pending no serious setbacks we are moving forward at a good pace.

Growing

Ok so Miss Avery hasn't been doing much other than growing, which is good. She is up to 2 lbs 14.4 ozs as of this morning. She should hit 3 lbs by the end of the weekend! Other than that no changes. She is still on her cannula and still doing well with her every 3 hour feedings of 21 ccs. Pretty soon they should be trying her off the cannula and also should be trying her out on a bottle. I was told they develop the ability to breath, suck, and swallow around 34 weeks. She is at week 33. She will be 34 this upcoming Sunday.

So for now no news is good news!

Here are some pictures taken by DW from last friday royal treatment:

Little Princess

Well yesterday instead of the rock star treatment she got the royal treatment. She had her spa treatment, which she loves, and of course had her every other friday photo shoot. Avery seems to really like her baths and really likes having her hair washed. It was really cute.

Miss Avery is up to 2 lbs and 10.6 ozs or 1205 grams.

Now that she reached 1200 grams that means she can now move to the next and final progressive care room. The one she is in now (annex) is the room babies go to grow. Once they reach 1200 grams they can then go into the regular progressive care room which is where they get the babies ready to go home! It will still be several weeks before she is ready to go home because she has quite a bit more growing to go, but she is getting closer and closer!!

Clothes

Miss Avery Kate is getting to wear clothes now! It is super cute! The preemie clothes are still a little big, but very cute! It was quite a challenge getting her into her outfit around her wires and through the little port holes we get to stick our hands into. Avery didn't seem to mind it. Avery actually seems to like wearing clothes.

Avery being able to wear clothes means she is doing pretty well at holding her own temperature. This is another step forward!

Graduation

Miss Avery had a good weekend! It took her a couple days to get use to her canula buy she did it. For a day or two she was looking paler than usual. We were told it was her adjusting and I guess the were right because she is looking better and she is still quite active. She was being such the wiggle worm yesterday that her nurse wrapped her up in an effort to get her to stay put. It was kind of cute.

And the big news is with all Miss Avery's steps forward she has actually out grown her pod. She was moved last night to the progressive care annex. The progressive care annex is basically where the babies go in that in between stage. My understanding is that she is no longer critical but she is not quite ready to be prepped to go home. So she is in between. She is stable and just needs to grow which is what the annex is for. So in a way Avery has graduated to the next step.

Baby Face

What a good day!!

Went to see Miss Avery today and her cpap was disconnected! They are trying her out on the nasal canula and she seems to like it! She was making good grades all day.

She did have a couple heart rate drops today, but none that required stimulating. I am praying if they need to do anything about the drops that it is to up her caffeine and not to send her back to cpap. No matter what it was great to see her face today!

Changes

Avery is getting bigger every day! As of tonight she was up to 2lbs 7.5ozs! WOW!

She is getting so big the shirts Pat and I wear for kangaroo care are getting too small. I actually had to go out and buy shirts especially for kangaroo care so that Avery would fit. And I have to say it was worth it because it was much easier to get her in and out tonight.

Avery is getting so big that today they even changed the way she is being fed! Initially Avery was getting fed every 3 hours, however early on they switched her to continuous feed. Continuous feeds means she has been getting small amounts of food round the clock. The main purpose of continuous feed is to be able to give the small babies more food than they could typically digest if consumed at one time. Well, that has changed for Miss Avery! They no longer think Avery is that small baby that can not digest all that food at one time. So now Avery is back to being fed every 3 hours. She still has the tube in her mouth that goes to her stomach just like when she was on time release, however now when it is feeding time they put her food in a little bottle and attach it to her tube and it slowly goes down. Mommy and Daddy can actually help with feedings now! We get to hold the bottles.

As of today Avery is 6 weeks old which is important! Now she is old enough to reproduce her own blood cells, which means the need for another transfusion has significantly dropped. And another important thing that occurs at 6 weeks of age is that Avery has an eye exam to check for ROP.

They did Avery's eye exam today. Poor baby even had to have her eyes dilated. We were told no signs of ROP (retinopathy of prematurity), which is abnormal growth of the blood vessels in the baby's eye. ROP can lead to a baby needing glasses or can be sever and lead to blindness, which is why they watch for it very closely. Miss Avery's next eye exam will be in 2 weeks.

They also did another brain scan today. I think this is the 4th scan. They watch for brain bleeds and thus far Avery has been in the clear. I was there when they did this one today and the tech thought it looked good, but of course we won't get an official reading until the doctor looks at it.

Yesterday Avery was taken off her diflucan which is nice just because it is one less thing she is on. The diflucan was being given to Avery as a preventative measure. There are types of infections that in the past have been pretty common with preemies, but giving diflucan when a preemie is born now helps prevent these infections.

Oh and Avery has a new pillow. DW thought she just looked too uncomfortable so she gave it back and I agree she did look uncomfortable. She said she can still use it for awhile. Matter of fact, here is a picture of Avery looking snug as a bug in a rug with greasy hair and all after her ultrasound. Just like when the do an ultrasound on your stomach or anywhere else they have to use gel. So little miss Avery's head was covered with it. Poor baby! DW couldn't stand it so she came over and washed it all out of course. When DW is there you can be assured Avery will look nothing but pretty, DW just won't have it any other way (lol).

Growing Girl

Miss Avery is up to 2 lbs 5 ozs now! I hear she should get to a point where she gains an ounce a day. I can't wait!

She did really well yesterday with her bump rate gone. So that is day 2 of her trial. If she continues to do well that means they will take away her cpapp soon. That will be so great! I know Miss Avery will be just as thrilled as Pat and I when that happens. She is constantly pulling on that thing and trying to pull off the tape. She is such a little mess.

The pillow in her bed is now gone too. For the itty bittys like Avery they give them this nice cushy pillow they can shape in all different ways. It is filled with powder and oil. Once the babies hit a certain size they can't use them any more. Miss Avery's sprung a leak which meant hers had to go. However they didn't replace it because she was outgrowing it anyways. I was sad to see it go because she looked so comfy in it, but a milestone is a milestone and outgrowing her pillow is one. So, we will take what we can get!

Firsts

Miss Avery was such a good girl this past weekend! She behaved (few desats) and she grew (an once)! She now weighs 2 lbs 4 ozs. She is up 5 ozs from her birth weight! I know that doesn't sound like much but when you think of it in terms of percentage of body weight that means she is up 20%! That is the equivalent of a 200 lb person gaining 40 lbs of which 4 ounces were over the past 2 weeks. Can you imagine gaining an additional 20% of your body weight in 2 weeks?

There were quite a few firsts that occurred over the last few days. I had my first Mother's Day. Avery gave me very pretty flowers and a very sweet card.

Another first was that Aunt Tammy got to change Avery's diaper (Saturday). That is the first time anyone other than Mom, Dad, or a nurse changed her diaper. And last but definitely not least Avery's Grandma (Maw) got to see Miss Avery out of her condo for the first time (today).

Today they took Avery off her bump rate again. As of our evening visit she seemed to be doing pretty well with it. She made good grades the entire time we were there. The increased her diuretics today. All of Avery's medications are based on her weight so as her weight goes up so will her medications. And thankfully Miss Avery welcomed her nurse in this morning with a nice big stinky diaper. We were very happy about this because Miss Avery didn't make any stinky diapers Saturday or Sunday and after 2 days with no stinky diapers that would mean enema. Can you say- YUCK! So luckily for Miss Avery and unluckily for her nurse today she took care of it on her own.

Other than that Miss Avery has been doing lots of sleeping and eating which is what she needs to do in order to grow and get herself home! We can't wait for her to get home. It will be so nice to be able to curl up on the couch with her and just hold her in our lap as long as we want.

Rock Star

Avery had a big night tonight. She had the rock star treatment- spa, photo shoot, being waited on hand and foot, thus she had to look like one too....

When we walked into Avery's pod tonight we could feel the heat right away. The entire room was warmed up so that Miss Avery could come out and have her bath without getting too cool, which I thought was so sweet. As a result not only did Miss Avery have a spa night but so did everyone else in the pod, but we all agreed it was well worth it for Miss Avery.

Pat and I had the pleasure of giving Avery her bath. I just about had one with her we were making such a mess, but it was fun.

After the bath came scales...

Next she had a little photo shoot with her teddy bear. The nurses were all so cute tonight. They were all getting into Avery's photo shoot. DW decided Avery needed a special blanket to take pictures on, then another suggested a backdrop. Before we knew it one was holding up the back drop, one shooting pictures, another making clicking noises trying to get Avery to open her eyes and look our way. It was really fun. They were really funny.

After all that fun and excitement Avery had to have her tubes put back in and it was time to go night night which she was more than ready for. Literally seconds after being put into position she was out like a light.

It was a fun evening for everyone.

Gaining Weight

Miss Avery is 5 weeks old today!

So I know I've been slacking on the blog the last few days and it is partially intentionally. Miss Avery Kate has been doing well and has been gaining weight. She is up to 2 lbs and almost 3 ozs! I've been scared to jinx her by writing about it! She has had several days of gaining in a row now. She is on the 24 cal fortifier and I guess it is working!

She had a few days where she was having a few more heart rate drops then normal, however that has all seemed to stop and she is back to being herself again. It sounds like in a couple days they may even try her without a bump rate on her cpapp again.

Her nurse DW says she can tell Avery is getting bigger. I know she is, but it is hard for me to tell since I see her everyday, however when you compare old and new pictures it is definitely obvious.

Avery looked so sweet and peaceful sleeping today. Avery likes to have her hands free and is usually either sleeping on her hand or has her hand near her face. Today we caught a few of these moments one while she was in her condo and another while she was doing kangaroo care with Daddy.

Daddy really enjoyed kangaroo care. It was his reward for changing not only a poopy diaper but a stinky one at that. It was the first stinky diaper Daddy has had to change. I had my first stinky diaper yesterday and just like Daddy I was rewarded with kangaroo care which made me very happy.

Since Miss Avery had been acting kind of sketchy the past few days we had not been taking her out to hold since we did not want to stress her. We still got to touch her on these days which is great but we did not get to have the close contact that comes with holding her or especially with kangaroo care. I can't speak for Daddy but I know for me personally kangaroo care was such a stress reliever. I felt like all my worries and anxieties that had been building up over the past week or so were gone after getting to feel her so close. It was so reassuring.

The heart rate drops and apnea may be normal for a baby her age but that doesn't make it any less stressful. And when she has not so great days Mom and Dad tend to have not so great days too. Take a few of those in a row and it can result in an exhausting week. So good days with kangaroo turn out to be a great way to rejuvenate after a few tiring days in a row.

Avery's Custom Diaper Bag

Just had to share something fun!

So this past weekend we had a shower for Miss Avery and one of the attendees was of course Aunt Wendy. And let me tell you about Aunt Wendy she is talented and sweet! She can sew just about anything and this dates back to her high school years from what I hear. I hear she made her own clothes back then and even her own homecoming dress. I wish I could do that. Hmm, I wonder if I can talk her into making baby or children's clothes (hehe). So anyways, recently Aunt Wendy started her own bag company, Satin Doll, and Miss Avery was the lucky recipient of a custom diaper bag made just for her.

It is absolutely adorable so I had to share! I was just totally impressed, not only with the creativity it took to design it all, but the quality as well. It's nice and roomy too! Once we out grow it as a diaper bag it will make a great overnight bag for Miss Avery. It was such a great surprise!

And I can thank her also creative daughter, Kim (graphic design and art), for sending me the picture above. I was going to take pictures to post, but they were already working on the above flyer, which worked out well. :)

Drops

So Miss Avery Kate is up to 2 lbs 1 oz! They have increased her to 24 cal fortifier as of yesterday and as of today she is being fed 5.1 ccs per hour. She has been getting eye drops for her slight eye infection and it was looking better today. It never looked bad just a little runny at times.


Today she had several heart rate drops which were rather unsettling. They did blood work on her and her blood count looks good. She doesn't have an infection and her theoflin levels were fine. The theoflin level basically tells them if medicine they are giving her for helping with her drops is at a level that should be working and it is. We talked to her night nurse and she said she hadn't had any drops since she had been there, which has only been 2 hours. So we will be eager to call in the morning and see how she did through the night. Her nurse said she made a pretty large diaper, first of the day, and that can cause heart rate drops if she was having a hard time while working on that. I am kind of skeptical that this was the cause since I was there fairly early this morning and again early evening and I would hope it wouldn't take her that long to work on a diaper and that it would cause that many drops. I guess we will find out in the morning if that was the case or not. If it was the case then she won't have many drops during the night. If it wasn't?


On a good note they did the 3rd brain scan a few days ago and it came back in normal range. It's common for premature babies to have brain bleeds and they tend to watch for this pretty closely. Avery has come back good on all 3 of her scans.

Day by Day

So as of yesterday Miss Avery was doing well with her breathing and the new fortifier which is all good. On our latest visits Miss Avery has continued to make good grades as Daddy would say which means Avery is definitely maturing, however we really need to work on this weight gain.

As of last night Miss Avery was back to 1 lb 15 ozs. Her nurse, whom I have decided we like, said she was going to talk to the nurse practitioner about when they will up her from the 22 cal to the 24 cal. Her not gaining weight really stresses us out, but we just keep telling ourselves over and over to remember it's a roller coaster and that she will get where she needs to be.

When they did the eye culture they detected a slight infection which they are now treating with drops. It sounds like the infection was minor and only in one eye.

Other than that Miss Avery is doing well. We are just taking it day by day.

New Nurse

So Miss Avery was being really good yesterday! So good that we were actually able to take her out for a bit and hold her. I am hoping that today she is doing even better!

They fortified her milk yesterday so we should see her start gaining some lbs! As of yesterday she was holding on to her 2.00.8 lbs so hopefully over the next week or so we will see her move up from there. They left her feeding amount at 4.9 ccs to see how she tolerates the fortifier. It sounds like they start her on 22 cal fortifier first to see how she handles that and them moves her up to 24 cal if she does ok with it. So we will see.

She is still on her cpap with her bump rate of 10 and it sounds like it will stay that way for at least a week before they try her without it again.

She had a new nurse yesterday. It is always interesting when there is a new nurse. Every one of them comments on how feisty Avery is. I like to watch them do their assessments so I can see how they move her around, how they deal with her fussing at them, and how much care they take in positioning her. There are some you feel instantly comfortable with and others not so much. I am learning that when we hold Avery with a new nurse for the first time we can expect it to be a shorter hold. I am sure it is because the nurse is checking to see how Avery tolerates being held, but at the same time it is kind of frustrating for us because we already know how Avery tolerates it so it kinda feels like we are being penalized. It's nice when we have nurses that we have had in the past because they already know Avery. They also already know us and our routine and visa versa which makes for a much smoother visit.

Yesterdays nurse was hard to read. I couldn't get a clear feel for her. I think yesterdays nurse seemed ok with Avery which is most important so we will see. I am really not sure what I think of her yet.

Better Day

So Miss Avery had a better day yesterday. DW said she was back to her old fiesty self. She said any time she did her assessment (checking blood pressure, temp, etc...) Avery fussed at her which is totally Avery. We didn't get to see too much of Avery's fiestyness ourselves because she was sleeping most of the time we were there. I did notice when I changed her diaper that there was a little more force back in her kicks which was nice to see. Avery of course likes to try and kick you away while changing her diaper. It is her attempt at making diaper changing more difficult for you and entertaining for her.

Partly as a result of the transfusion and hopefully partly as a result of her actually gaining weight Avery was up to 2.00.8 lbs which is progress. On the 26th when she first weighed in at 2 lbs it was 2.00.1 lbs. Then she dropped a little below again and now she is back.

Here feedings were moved up to 4.9 ccs the same day she had her transfusion from 4.6 and she seems to be handling it well. I got to see the proof when I changed that nasty little diaper.

She had the hiccups again yesterday. She has them everyday, however this time I happened to have the porthole open on her condo and I noticed you could actually her her little hiccups. When she first got there you could barely hear her especially with all the other sounds around you. So either Avery is starting to develop those lungs or the pod (NICU room) just happens to be quieter more often. I am going to go with Avery is getting louder which to me means stronger and bigger. We really got to hear her the day Daddy had her our doing Kangaroo care. Her cpap started to come out and boy did she let us know.

Other than that yesterday was a rather uneventful day for Miss Avery and in NICU uneventful is GOOD.

Here are a couple pictures DW took of Miss Avery: